Mandating genetic counseling prior to cancer genetic testing

What does it mean for patients?

Jessica Everett

Jessica N. Everett, MS, CGC, U-M Genetics Counselor

Up to 5-10% of cancer diagnoses are caused by inherited gene mutations. Identifying patients and families who may carry these mutations is important because it can often lead to medical interventions to promote early detection or risk reduction. Genetic testing is the gold standard for identifying inherited mutations related to cancer risk.

As is true with other expensive medical procedures, genetic testing is most beneficial and cost effective when targeted for patients and families with suggestive personal or family history. Testing for the most common inherited cancer syndromes, Hereditary Breast and Ovarian Cancer syndrome and Lynch syndrome, can cost up to $4,000 for a single patient. The UnitedHealth Center for Health Reform and Modernization reported in 2012 on combined data from UnitedHealthcare, Medicare and Medicaid, estimating that $5 billion was spent on molecular tests nationwide in 2010. Growth trajectories estimate that this number could rise as high as $15 to $25 billion by 2021. Increased use of molecular testing is likely to contribute to increased overall healthcare spending, but appropriate use of testing could also improve health outcomes and thus decrease costs.

A study conducted by ARUP Laboratories found that review of genetic test orders by genetic counselors over an 11 month period identified 100 tests per month (at an average total cost of $36,500 per month) that were incorrectly or inappropriately ordered. These errors, when uncorrected, lead to delays in medical decision making and increased diagnostic costs for all patients without improving health outcomes.

Health care providers, researchers, testing laboratories, and public health officials are interested in identifying patients who are most likely to benefit from genetic testing, while at the same time reducing money wasted on unnecessary or incorrect testing. The goal is to utilize limited health care resources to benefit the largest possible number of people. There are several approaches to this problem including efforts to track utilization of genetic testing, educate health care providers about identifying at-risk patients, and encourage insurers to cover appropriate tests.

In a new approach to these problems of patient identification and appropriate test utilization, a major insurer (Cigna) announced in July a new Genetic Testing and Genetic Counseling Program which will require its customers to undergo genetic counseling with a board certified genetic counselor or medical geneticist prior to undergoing testing for hereditary breast and ovarian cancer, colorectal cancer, and Long QT syndrome (an inherited heart condition).

This represents the first national insurer to implement such a plan, with the goal of reducing unnecessary testing and limiting potential anxiety and physical harm that can occur when a patient has inappropriate genetic testing. The policy has raised some concerns among patient advocacy groups, who worry that limited access to genetic counselors may discourage high-risk patients from having genetic testing. In an effort to address these concerns, Cigna has partnered with InformedDNA, a company that provides genetic counseling services by telephone for patients who may not be otherwise able to access services.

Ultimately, whether it proves to be successful or not, the program will provide useful data about utilization of genetic counseling and testing services and patient and health care provider preferences that could help guide policy and programs in the future.


ARUP Laboratories, Value of Genetic Counselors in the Laboratory.  White paper, March 2011. (pdf)

UnitedHealth Center for Health Reform and Modernization. Personalized Medicine. Working Paper 7, March 2012.(pdf)

National Society of Genetic Counselors, Genetic Counseling Program Gives Cigna Customers Increased Access to Genetic Counselors, Press Release, July 2013. (pdf)




The University of Michigan Cancer Genetics Clinic provides counseling for people with a personal or family history of cancers that may have genetic links. If a link is confirmed, our specialized physician and genetic counselors will develop a plan for additional screening or lifestyle changes to help reduce cancer risk.


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